NET - Insulinoma

Teresa, did you have an insulinoma? So you had tumors in the duodenum bulb, what were those surgeries like. Who was your surgeon? Because of my pancreatic leak I needed a second big surgery, they did try procedures to no avail.

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Hello Teresa,
To answer your question, I refer to my symptoms as classic because that is exactly what the Physician who diagnosed me said.
If I didn't eat frequently I would become nervous / scared, I would sweat and shake...inside and out. I believed I would soon faint or go into a coma. Eating and not moving much was how I managed to stay alive. I would rest as much as possible. I would tell my physicians and husband who is a physician how I felt, but no one took it seriously. I was very thin as a young person, at 45 I started to gain weight and began menopause. So to everyone including myself it looked like I was gaining and tired from menopause.
It was difficult to become over weight and try different diets and I did try to walk....but I just couldn't do it. I always felt it may have been due to a sugar problem and would ask my Dr. to please do a more thorough sugar test. On my last yearly exam my Dr. ask me why on earth I thought I had a problem as my Basic test show that my sugar is low, therefore I do not have diabetes or pre diabetes.
Two months later at Mayo...I'm told that " low sugar is a marker ". No one in 15 plus years ever suggested I see an endocrinologist.
Even an endo at Mayo who called me with results of my thyroid biopsy told me not to count on that diagnosis and ask me who told me I may have an insulinoma? I never told that physician to protect the other. My Dr back home told me it's so rare I doubt that it's true. To answer your question, I didn't know anything about the pancreas I never dreamed I would leave Mayo Clinic that week with an answer to the symptoms I had for so many years. It was the thyroid nodule and my weight gain that drove me to make an appointment with Mayo. No one ever suggested I go there. I came alone looking for an answer why I have the episodes when I don't eat.

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@sarcomasurvivor

Of course, most of us on Mayo Connect are not medical professionals, just patients like yourself. So we cannot diagnose your problems, we can only share our own experiences.

It sounds like you might have some neurological problems associated with you previous intensive cancer treatment given the balance, double vision, etc. Have you seen a neurologist? For the digestive problems, have you had an upper and lower endoscopy? Most neuroendocrine tumors are found in the digestive tract.

Have you had a consult with an endocrinologist regarding the extreme hunger and weight problem?

I certainly understand your need to find answers. These symptoms sound very distressing as well as inconvenient. I would be interested in learning more about your search for an answer. Will you continue to post as you look for answers?

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I will post as I learn more, hopefully. I am waiting for a phone Consult from the Mayo neurologist I saw last month. Some question whether this is inherited spinocerebellar ataxia after seeing local movement disorder specialist and Mayo neuropthamalogist. However, as my symptoms fluctuate by time of day, I started to wonder if my system was being affected by hormones or other chemicals, especially in the morning.

I had a sigmoidoscopy and endoscopy a year and a half ago at Mayo with nothing found. I will ask the Mayo neurologist if an endocrinology referral Is in order. Thanks.

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@sarcomasurvivor It sounds like you are off to a good start. You are asking good questions and really thinking this through. You said in your post that, "my symptoms fluctuate by time of day" and I'm just wondering if the symptoms are worse when you are tired? If so, this is a good point to bring to the attention of the doctors that you speak with.

I'm looking forward to hearing from you again as you continue to search for answers as well as help. Keep advocating for yourself. You are doing a great job!

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<p>Without the expertise of the physicians at Mayo, I believe my difficult situation would have finished me. Dr Kapoor diagnosed me in minutes. I suffered for two decades, in just one visit to Dr. Kapoor my life was changed forever. Thank you to the fine Internist who sent me to her, the surgeon who removed my insulinoma, the Drs who worked at trying to stop the leak and last but not least Dr. Cleary who did a second surgery to stop the leak while saving my pancreas. God Bless you all and Mayo Clinic for giving me a far better life than I was living with that tumor. Gratefully yours, Marilyn A. Blum</p>

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@marilyn2525

So glad to hear that you are doing so well, Marilyn!

Just wondering, did you have the Whipple procedure or something else?

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